2009 National ALS Advocacy Day and Public Policy Conference Highlights

“I truly didn’t grasp what a powerful experience this was until I attended in person,” said Stephanie Steele, after attending her first national ALS Advocacy Day and Public Policy Conference, which was held in the nation’s capital in May.   Stephanie came to Washington to advocate with her father, Daryl Thorson of Sioux Falls South Dakota, who has ALS and is a veteran attendee of the Advocacy Conference.  Upon arrival in Washington, she quickly learned what Daryl experienced after his first trip to the conference:

The power of the conference is found in the people attending and the knowledge that families impacted by ALS are not alone in the fight – that they can make a difference.

In fact, advocates from across the country representing the entire ALS community – people with ALS, families, caregivers, researchers and clinicians - came together for the 2009 conference to share their hopes and experiences and to join The ALS Association in creating the roadmap that will lead to a treatment and cure.

The ALS Association’s Public Policy Conference is part of a year-round strategic effort to improve patient care, advance research and empower people with ALS through advocacy.  By leveraging the single largest source of ALS research funding, the federal government, the Advocacy Conference is making a difference in more ways than one.  For example, unlike virtually anything else experienced by families with ALS, advocacy presents people like Stephanie and Daryl with the opportunity to play an active role in the fight against the disease - to fight back against ALS.   Indeed, the accomplishments that resulted from last year’s conference left the government poised to spend more than $1 BILLION on ALS over the next 10 years. 

Armed with a story to tell and a passion to make a difference, Stephanie and the hundreds of ALS Advocates who attended this year’s conference flooded the Halls of Congress and met with nearly 400 Senators and Representatives.  The goals:

  • To continue funding for the national ALS Registry, which may become the single largest ALS research project ever created; and
  • To double funding for the ALS Research Program (ALSRP) at the Department of Defense (DOD), a program whose sole mission is to develop a treatment for ALS.

It is clear that the meetings made an impact as 33 Senators signed a letter calling on the Senate to increase funding for the ALSRP to $10 million.  This is the largest number of Senators who have ever signed onto our DOD funding letter, which last year led Congress to enact our request and provide $5 million for the program.  The support generated this year – in just a matter of days – was greater than similar letters supporting other disease research.  Why?  Because advocates told the ALS story, put a face on the disease, and made a policy issue personal.  After all, Members of Congress can’t forget shaking the hand of a person with ALS who no longer can return the grip.  As Stephanie said, “I believe the personal visits make it impossible for our message to get lost in the shuffle.”

The sense of empowerment was not only felt walking the Halls of Congress.  It was present on each day of the conference – whether during the conference’s opening session where advocates from across the country announced their presence in Washington, the “Prep for the Hill” session or even the Mother’s Day BBQ where attendees had the opportunity to meet hundreds of others who share the same experiences and the same hopes in the journey toward a treatment.

Research and Policy Breakout Sessions

Prior to the Hill visits advocates heard about the results made possible by advocacy, including the latest progress in creating a national ALS registry and the CDC’s plans to establish an online portal that allows patients to self enroll in the registry; translational research funded through the ALSRP; research underway at the National Institutes of Health (NIH), the single largest source of ALS research funding; and exciting advances in stem cell research. (For additional details see http://www.alsa.org/news/article.cfm?id=1487.)  

Breakout sessions also delivered more information to attendees about veterans benefits The Association helped secure in 2008 for military veterans with ALS; new brain-computer interface technology; and Congressional funding for respite care.  And for the third consecutive year, The Association held a breakout session designed to help children and families become involved in advocacy efforts.

Celebrities Join the Fight Against ALS

Several celebrity advocates whose lives also have been personally impacted by ALS joined the fight as well.  Kate Linder, star of the hit daytime television program, The Young and the Restless, emceed the conference opening session as well as the Candlelight Vigil (see below);  former NFL All-Pro from the Carolina Panthers, Mike Rucker, shared memories of his grandfather’s fight with ALS during the Vigil and meetings on Capitol Hill; and former Major League Baseball All-Star pitcher Curt Schilling energized advocates during the Celebration of Excellence Reception where The ALS Association honored he and his wife Shonda for their tireless efforts to support people with ALS.  The Schillings also joined with PALS and families to meet with leaders on Capitol Hill.

In addition to Curt and Shonda Schilling, The ALS Association also honored two of the ALS community’s champions on Capitol Hill: Senator Lisa Murkowski  (R-AK) was on hand to receive the Jacob Javits Award for her instrumental efforts to help enact the ALS Registry Act in 2008; and Rep. Jerry Lewis (R-CA) was honored with the Henry Wallace Award for his tireless efforts to increase federal funding for ALS specific research through his role as Chairman, and now Ranking Member, of the House Appropriations Committee.

ALS Association Pays Tribute to Those Lost to ALS

While the focus of the conference is to advance ALS public policy, two special events held during the conference reminded attendees why we come together in Washington each year. 

Wreath Laying Ceremony at Arlington National Cemetery

Under a clear blue afternoon sky, The ALS Association laid a wreath at the Tomb of the Unknowns during a moving ceremony at Arlington National Cemetery attended by ALS advocates and the public.  The ceremony was held to honor those military veterans we have lost in the war against ALS and to reinforce The ALS Association’s commitment to fight for veterans with ALS just as they fought for us.  Four advocates represented The Association during the ceremony:

  • Sharon Harrison from Virginia, who lost her husband, a Vietnam Veteran to ALS;
  • Jeff Faull of Pennsylvania and Jim Thew of Illinois, Navy Veterans with ALS who have testified before Congress in support of ALS research and benefits; and
  • Ken Patterson, a retired U.S. Marine with ALS. 

Candlelight Vigil

During The Association’s annual Candlelight Vigil, held on the steps of the historic Carnegie Museum, several advocates shared memories of their loved ones who have been lost to the disease and paid tribute to all of those still fighting.  Speakers included: Kate Linder; Mike Rucker; Cindy Gould of Iowa who lost her husband to ALS; and Eric Zydel from Western Pennsylvania who lost his wife to ALS.  The vigil provided attendees with renewed purpose and once again signaled that The ALS Association is lighting the way for a treatment and cure. 

For Stephanie Steele of South Dakota – and the hundreds of others who joined her in Washington – the 2009 Advocacy Conference was an event to remember.  And it was an event that made a difference in creating the roadmap that will lead to a treatment and cure for ALS.

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